Deming in his work ‘Out of the Crisis (1982) made the point that quality depends on who is the judge of quality. In the case of healthcare this could be the patient, healthcare professional, manager, organisation, commissioner, inspector or regulator, each with his, her or its own perspective.
The patient and service user perspective is increasingly understood as being central to efforts to judge and improve healthcare quality. It could be reasonably asked, what perspective of quality is there other than the patient viewpoint, whether this relates to the care that the patient experiences or the clinical outcomes that result? To quote Robert Francis QC: “individual experiences that lie behind statistics and benchmarks and action plans that really matter, and that is what must never be forgotten when policies are being made and implemented. (Francis 2010)”.
Unfortunately, in the past, quality and improvement efforts in healthcare have focused on what professionals think patients should value, and have been less interested in what service users themselves feel is important or have failed to elicit patients’ views directly. Professional perspectives are a proxy for that of the patient but there may be occasions where the two diverge and the reasons for this need to be understood.
Understanding what services users value is therefore necessary, but not always sufficient, for knowing where we should focus quality improvement efforts. Just as importantly, service users should also be involved in how we should bring improvement about or judge whether it has been achieved. This requires a major shift in our thinking from patients being (passive) recipients of care to being (actively) involved in informing and improving services.
Service users and patients can play a variety of roles in healthcare improvement. Involving patients to access their views and to implement improvements is something that health services are at an early stage of addressing. Users can be individual patients, patient group members or patient representatives, each with different levels and kinds of knowledge, experience or approach, which might lead to conflicting views. Recent reviews and reports have emphasised that more needs to be done to involve patients and services users in healthcare and have made recommendations on how this should be achieved.
Don Berwick and the National Advisory Group on the Safety of Patients in England, in their publication A Promise to Learn – a Commitment to Act: Improving the Safety of Patients in England, expressed that patients and carers should be present, powerful, and involved at all levels of healthcare organisations (National Advisory Group on the Safety of Patients in England 2013).
The Keogh review, or Review into the Quality of Care and Treatment Provided by 14 Hospital Trusts in England, stated that we should involve patients, carers and members of the public as vital and equal partners in design of services and involve patients and clinicians as active participants in regulatory inspections (Keogh 2013).
Transforming Participation in Health and Care sets out a grand vision for participation in the UK NHS. It provides a framework for commissioners of services to promote individual participation in care, to engage the public in commissioning, to act upon patient feedback, to engage with patients, carers and the public when redesigning health services, and to publish evidence of these activities and their impact on services (NHS England 2013). For example patients can:
Patient participation groups (PPGs) are well established in many general practices. Activities and roles undertaken by PPGs include: health education (e.g. running educational meetings for patients); acting as a ‘critical friend’, giving advice and feedback on services provided by the practice; generating material support for practice developments (e.g. through fundraising or providing voluntary services).
There is now greater lay and patient involvement in regulatory bodies (such as the Care Quality Commission, Monitor and professional bodies in the United Kingdom), regulatory inspections and appraisal of health workers and this is likely to increase in future.
Satisfaction and experience are both expressions of ‘utility’ or ‘happiness’ with services provided. Of course, many people prefer not to use services unless they have to.
There are many ways of eliciting patient views, ranging from those such as surveys or questionnaires, which attempt to provide a broader more representative assessment from the population being sampled, to interviews, focus groups and patient stories, which try to gain a more in-depth understanding. Other methods that provide lesser degrees of breadth and depth of views include online ratings, ‘mystery shoppers’, complaints and compliments from patients, relatives or friends, feedback from patient liaison services or patient participation groups, and public meetings.
Patient satisfaction surveys are regularly undertaken in most health settings and are intended to provide a quantitative (and often representative) assessment of satisfaction with services in a number of domains. For example, the general practice patient survey linked to the Quality and Outcomes Framework covers areas such as access (telephone, face-to-face, in-hours, out-of-hours), continuity, communication, care (from the general practitioner, nurse or receptionist), support for self-care and overall satisfaction (Carter et al. 2009).
Satisfaction levels with health services, particularly general practice, are often high, but this does not necessarily mean that users’ experiences of services are good. Surveys can be biased by how they are administered: high satisfaction with access in patients distributed a survey in a general practice waiting room may hide poor levels of satisfaction in those patients having the greatest difficulty getting appointments. The questions and response formats are constrained by particular areas and issues that are considered to be important by health professionals which is not necessarily the same as what patients perceive or need. Finally, satisfaction will be affected by patients’ expectations.
To understand patients’ experiences implies seeking to see things from the perspective of patients. This requires us to work with patients to gather information on what constitutes a good or a poor experience, and this may vary by person and setting.
Service users need greater information in order to be fully involved in judging and improving healthcare quality. A range of online resources are currently available to improve health literacy: